posted
i have been under tx since 8/08. I am on IV and oral abt. Hubby and his mom have also tested +. hubby has started tx but his mom has tested allergic to ALL abt. on testing done way before the lyme issue was known in our family
so, we have 3 kids. we dont know how long i have had it but LLMD concerned about all 3. To me, seems like this goes back a generation on hubby side??
oldest is 12 will soon be 13. he is " ADHD" and has been on meds since 1st grade. without his meds there is MAJOR difference.
so, is it better to start with the homepathic, natropathic treatments?? or detox treatments only to start??
i have had rough go of things, and in hindsight prob. should have done detox issues first. i jumped into abt. first then, about 3 mo. in learned about supplements recommended by Dr B (LLMD uses his guidelines)
learned about detox issues here, not LLMD. he doesnt know much about that. does say has had pt do well with CAM use, accupuncture, and herbalist tx as long as they understand abt.
From what i understand, if our kids are congenital (probable) blood testing is very poor for reliable resutls- dont make lots of antiboidies since been there from conception, so their body does not mount a defense to be measured on the already bad testing. think i have this right???
There is not any pedi LLMD in tx. Have posted in seeking Dr about LLND in tx without response. I did talk to N.P. who had tx kids with ADHD but does not know about lyme.
any suggestions, info, your own lessons learned would be most appreciated. i am very leary to just start kids on abt. without exploring other options. CAM stuff is very new to me and i am trying to learn
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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bettyg
Unregistered
posted
my 3 boys, i answered your question in seeking dr; gave you the best of what i'm aware of
going to copy my welcome letter to you below ... print out dr. b's 08 lyme guidelines. i haven't read it in sometime so don't want to quote anything due to my severe neuro lyme fog ok
in there are ilads treatments too ... read that over ; NOT SURE IF IT'S DR. B'S OR DIFFERENT....
good luck to your entire family.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
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posted
I have two congenital kids -- one has an igenex positive, the other is untested. My 4 year old is started with the non-allopathic treatments, even though his cd-57 suggests a very poor immune function. We did a homeopathic and are now doing Transfer Factor from Chisholm labs. Big scary, scary herx after the first few doses. 12 year old (with positive test) is on 2 allopathic has done homeopathic and is on the transfer factor. You can follow our blog:
lymemama.wordpress.com if you would like more details.
This was a surprise to me. . .since my son tests positive:
quoted text: From what i understand, if our kids are congenital (probable) blood testing is very poor for reliable resutls- dont make lots of antiboidies since been there from conception, so their body does not mount a defense to be measured on the already bad testing. think i have this right???
And this is exactly why Transfer Factor promises to be very effective for them.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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I wanted to bump this up -- there are MANY of us in the lyme community who have kids and who struggle with the whole treat/don't treat yet/ever treat? dilemma.
Some of the social networking sites have groups for parents, too.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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posted
I had Lyme before my kids were born. I only had the one treated who was showing symptoms. Many people carry Lyme and do not get sick from it. Treated doesn't eliminate it, so I decided based on symptoms.
If none of them are sick, I'd probably look into what herbs/supps can keep them healthy and build their immune systems .... and maybe even herbs that fight off the Lyme a bit.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thank you for the responses, i am just so scared about treatment and the kids
i feel horrible since all this and cant imagine what there little bodies would be going through!!
even my hubby is trying to understand and worried we might be "barking up the wrong tree" with me and my health- all being lyme related.
i do think lyme is the problem, did test WB+ on labcorp and igenix, same with RMSF. IgM only. however on "lupus" tx for over 8 + yrs before. was on immunosuppressant/steroids when doing MS workup last summer. neruo did lyme test as "last ditch" and was confused when + but IgM. he expected IgG. so, i have given him medical literature about it. With me we dont know what came first? the chicken (real auto-immune disease?) or the egg (lyme and co)???
will try to read through yall's blog's. thanks for that. i feel like i have learned things the hard way with me and all this. i want to be able to use what i have gone through to hopfully prevent my kids from the pain i have everyday, and haywire brain.
feel like treating bart heavier is what we have been missing in my tx. week 3 into cipro and lots of issues/herx???
sixgoofykids: i feel like that is our family, having it but not being sick from it. younger 2 seem fine. oldest i am just not sure???? the GI issues worry me, and probiotic help. the aches/pains to knees, headaches. lyme and co? or just normal age related stuff ?? did grow 1/4 in in just 4 wk. he is VERY small for his age and ADHD- LLMD thinks he is at risk, that all our kids are. just wonder with kids if the herbal approach is better to start??
if so, what about using practicioner who is not familiar with lyme?? the NP is spoke wiht said she is not educated on lyme or coinfections but would tx it like a parastite infection and go from there. uses certain things for adhd, and chlorophyl??
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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My mom has been sick since I can remember. Misdiagnosed with many, many things.
Well I started to get the same symptoms at age 30 that she had at that age.
After years of doctors not having a clue, having to let my career go and going out of my mind. I figured out it was Lyme by a process of elimination. Didn't remember a bite but decided to get tested anyways. I tested CDC positive!
Then talked my mom into getting tested. She is very sick! She tested Igenex positive but not CDC. Though she has more positive bands them me.
Anyways, my brother also is positive so we believe we were both born with it.
Then after much thought, I decided to test my 2 boys. One has Aspergers (form of autism) and many, many health problems since he was a baby. He was on steriods for asthma which I now believe made his lyme worse then my other son's. He's been so sick that he's on medical leave from school.
My other son didn't show as many symptoms. He shows a lot of depression and withdrawing. He did have some questionable health issues with his stomach and had ulcers. He's 13 and my other son is 10. So we tested them both. They both had only a few positive and IND bands. But did test highly positive for Mycoplasma and many viruses.
It's hard to say what to do? A lot of my older sons symptoms could have been normal kid things too. But then I think of all the health issues I had growing up that may have been lyme. If I knew then that I had it maybe I wouldn't be 34 years old and have arthritis and fatigue so bad that I have to watch my family live life from the side lines.
I made my decission to test them because I didn't want them to get older and then find out they had Lyme and would be as sick as I am. It's tough because they have to go through some of this now as children, but maybe they will get better faster and their future will be brighter. I have much more hope for them then I do for myself.
Anyways, that is why I tested them. It's a tough decission for sure!
One thing (sorry this is long) but we did do the detoxing and supplements before starting abx. Our natural doctor that we found to do the Lyme testing told us to do that. My older son responded well to that. He actually started coming out of his depression some and talking more to us.
My younger son was having a tough time during detox so we had to back him down. He was having allergic like reactions. We didn't know if it was the herbs or just the detoxing. But like I said he is sicker so that's probably why.
Ok sorry to have rambled on. Just wanted you to know you are not alone. I cried many times and still do trying to make sure I do the best for my kids. It's tough when you are sick too. It's really tough!
Hang in there!! ((HUGS)) Amy
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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